The mental health needs of people living with HIV

April 7th is World Health Day and this year the theme is depression. People living with HIV tell UNAIDS that depression is often a challenge they face, when first diagnosed with HIV.

Ayu Oktariani, is a 30 year-old mother living with HIV from Indonesia. She tells us her story of how she overcame depression after learning about her status.

(The views and opinions expressed in interviews or commentaries are those of the interviewees and contributors and do not necessarily reflect the official policy or position of UNAIDS)

UNAIDS: Can you tell us your story of how you found out about your status?

Ayu: In 2009, my former husband became sick. We didn’t imagine that it was because of HIV. We were trying to find a hospital that could make a diagnosis because his condition was so complicated. Sometimes he was healthy, sometimes he was sick and then he fell into a coma.

One of his friends told us to have him tested for HIV. His parents and I knew that he was a person who injects drugs, but we didn’t know that you could get HIV from that. After that we went to a hospital and the doctor also tested my daughter and me, and we found out that we had HIV.

UNAIDS: What was your reaction when you found out your status?

Ayu: Mostly the feeling was confusion and I didn’t know what to do because I was thinking about my husband who was in a critical condition. I was also thinking about my daughter. I wasn’t thinking about myself.

Two weeks after we found out our status, my former husband passed away. At that time, the sadness, the pain and all the bad feelings came out.

I remember I froze my life. I didn’t want to think. I didn’t want to feel.

We decided to move to my parent’s house. Both of my parents helped with the logistics, they helped with my daughter. With my internal situation though, I didn’t tell them about what I was feeling.

I would just go to work and go back home, just do what I had to do, but I didn’t feel like I was alive. It felt like a routine.

My former husband’s friends tried to help me find the contacts for support groups, but I didn’t think that it was the right time to talk. I didn’t want to give my problems to other people.

So for months I decided not to get help from anyone, I would keep things to myself, I would cry every night.

UNAIDS: How did things change for you?

Ayu: My parents were living in a very small city, so it’s easy to find out if you have HIV or not. In the office where I worked, one of the staff members was my former husband’s neighbour and they knew about his status. My boss asked, and since I cannot lie, I told him. They didn’t stop me from going to the office but they preferred that I give them my resignation letter.

I was very sad because that was the first time I ever experienced discrimination. I thought that this is what I will go through once people know that I am HIV positive. So when my friend asked me to go to the support group, I thought maybe I should be with people who have the same problems like me. People who face the same stigma and discrimination.

UNAIDS: What was the experience of the support group like?

Ayu: Once I joined the group I was shocked and surprised, because the situation in the support group wasn’t what I expected. There were some couples who would come together and bring their children. They were like a big family. I thought they would be suffering, but they were mostly happy, they gave me motivation.

I wanted to laugh at myself, I could be like them, I can move on and try to live my life. So I would just come, introduce myself, they would smile and give hugs. It really changed my perspective, it opened up my mind and heart a lot. It became my stepping stone to being a better person.

UNAIDS: How did you overcome depression?

Ayu: I felt much better after being with the support group. I finally found more friends and heard more stories. I thought that it was only me who suffered, but after I met them, it felt like nothing. I still had my family, I still had my home, my daughter was still alive. I felt lucky, I felt blessed.

Usually when I went to hospital, I would go with my father. But after joining the support group, I told my father that I can go alone. He was a bit shocked but he said that it was great news.

The second year after finding out about my HIV status, I decided to move on and get a new job. I was working as peer counselor, I thought this HIV circle would be my new home, so I can release my pain. I decided to cheer myself up by talking to more people, and helping them. So that’s the first time when I felt very alive. I got the positive thinking back.

UNAIDS: What can be done to support people living with HIV address depression?

Ayu: Doctors should make more efforts to convince people living with HIV to get help, because some of the doctors are so quiet and won’t talk about our feelings. They only talk about the physical situation, our health situation, but they don’t probe our problems.

We only have limited time with the doctor. So that is a big problem in Indonesia, the system of the hospital only focuses on physical health, but is not very concerned with what a patient is feeling.

UNAIDS: Any words of advice to those who just recently found out about their status, and may be feeling depressed?

Ayu: It’s okay to feel pain, feeling sad is very normal. They also need to stop and think of what’s next.

Sometimes you can help yourself, but when you cannot you need to ensure that you can find help. After you realize you need help, then find it. You shouldn’t be ashamed, it’s fine.

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UNAIDS Asia-Pacific

The Regional Support Team provides timely and effective support to UNAIDS Country Offices in Asia and the Pacific, while working with regional partners to coordinate and provide programming and technical support to strengthen national responses.